A few months ago I was hired to write with cancer patients at a hospital near my home. The woman who hired me brings artists, writers and musicians into the hospital to give patients some relief from what they’re going through, and an opportunity to channel this time in their lives in a creative way.
Every Monday I scrub myself clean and walk through a series of sealed doors and into the bone marrow unit, which they’re proud to say has the “cleanest air in California,” and where very sick men and women with severely compromised immune systems and very few white blood cells camp out for up to one month as they get ready to go through their bone marrow treatments, which, if successful, will give them new, healthy blood cells. My cousin Craig, a doctor, tells me that bone marrow transplants are end of the line choices. They’re painful and can have terrible complications. They can also extend a person’s life by years they wouldn’t have had.
I’ve often felt clunky around sick people. Everything I want to say to them feels cliché. When they ask me about my life and I say, “Great! I’ve got this new teacher training and I’m playing racquetball again,” it can sound ridiculous. I have one friend who I may have lost because of a letter I sent him which was meant to be inspirational and encouraging, but felt to me after I re-read it like I was out of my mind, completely insensitive.
Every time I get to the hospital my heart is pounding so hard that I have to stop in the bathroom just to steady myself.
I’m not the type to show up at someone’s house uninvited, so the last thing I’m comfortable doing is barging in on someone – a stranger – who is going through the worst, most scary thing in their life, and ask them to open up to me.
I begin at the nurse’s station, asking the nurses which patients are feeling up to writing or even visiting with me. “Go see Gonzales in room 701,” they’ll say, “She loves to talk!” or “Peters in 1203 hasn’t had visitors in a while.” On a unit of 30 beds I might get the names of three people who feel well enough to talk to me. The others, the nurses will just shake their heads, “No, not today.”
I wish I could tell you more about these remarkable cancer patients – the details of their lives, who they were before they got sick, how this experience has changed them, and the jaw dropping things they say to me – but I can’t because I signed an oath – a HIPPA agreement which allows me to talk about my experience, but not theirs. It’s their business after all, and not mine to turn into story. But I can tell you what I think is happening to me through this work.
After I speak to the nurses, I gather my courage and I knock on someone’s door and ask if I can come in. I never know who I’m going to meet – a young Hispanic man in his 30’s, a single woman with five children, an older gay man, or maybe somebody’s grandmother. I tell them I’m a writer and that I was hired to talk to patients about what they’re going through and maybe do a little writing together.
Most of them invite me in, so I pull up a chair and I start, “What’s going on?” I’ll ask. “How did you land here?”
Most of them don’t want to write – they’re not feeling well – and even if they were going to take a stab at it, some people, like the guy who’d been diagnosed with leukemia a year before, didn’t want any record of what he had gone through because like he said, “I don’t want to remember none of this.”
It’s always the same. They were just living their lives. They were coaching their kid’s softball team, they were raising a couple of kids on their own, they were getting ready to retire, they had just changed jobs, they were at the top of their careers, running around checking their phones, making lunch dates, looking forward to vacation, crossing their fingers that they’d be able to pay a bill, trying to lose a few pounds.
Just the business of life, the way we fill our time, the way we live.
And then boom. They didn’t feel well. Boom they kept going. Boom they meant to call the doctor. Boom they thought it was nothing. Until they did get to the doctor and then boom, here they are in a hospital room overlooking the city, hooked up to an I.V. bag.
I’m not a doctor. I’m not a nurse or a social worker. I’m not a chaplain. I’m just a writer, a mother of two, someone who’s left leg has been hurting for two years, a writing teacher, someone who believes in turmeric, a woman who needs more sleep, whose attention span is so shredded she has a hard time making her way through a book, a woman who never prays.
I’m also a woman who looks for meaning. Most writers do – even this piece – as I write it – is an attempt to understand something, to pull the pieces together. And that’s what I try to do with these very sick people. As they tell me their stories, I take notes, and 30 minutes in I might reference something they said earlier, “It’s like what you said about…” I’ll say. It’s just the way I think. I like to figure things out. I like to connect the dots so that I can create a narrative that we can live with, a way to hold things so that they make sense, so that the cancer is not some random piece of crap that falls from the sky, but something we can weave into a larger story and understand.
But what I’m learning is that while trying to make sense is a way to make us feel better, it’s also a way to avoid the pain of the way things are. Because sometimes there are no words for what’s happening, like the day when I spent some time with a young man who lay alone in a bed, a guy who was hooked up to a number of tubes which made it impossible for him to move and made it hard to speak, a guy who’d been fine a month ago and then boom. Even the nurses didn’t quite know how to be with him because he hardly spoke and so he ended up spending most of his time alone in his room.
I angled myself so he wouldn’t have to strain his neck to see me and he was kind enough to tell me the basics of the story, which went something like, “I was living my life – working – raising little kids and then I got sick.” And then he stopped talking. I probably asked a few more questions about what kind of support he had. He couldn’t feed himself and needed to have family come in to help – a nephew here, a cousin there. There were kid’s drawings on the wall and I asked about them, and maybe I tried to bring a little lightness into the room saying something that felt stupid at the time, how he better get well so he could get back to those kids, which is when I noticed tears leaking out of his eyes, and then they began leaking from mine. We sat in silence for at least two minutes. I turned my head and stared out into the tree tops below his window. The intimacy was unbearable.
“It must be hard to get people to open up,” he said after a while. I said that sometimes it was, but then we were quiet again.
And after a while I said I was going to go, and that I hoped he felt better. And maybe I thought I failed a little because mostly I can get people to talk, and then if we’re lucky we’re able to make those meaningful connections, those narratives that I’m so enamored with.
But with this young man I could not, and he could not – and it was just sadness.
I went outside of the hospital and sat down on the dirty curb right there on the corner of the busy street. I sat there in silence and watched the stream of doctors and nurses, patients and their families crossing the street and entering buildings. I saw mothers holding babies, little dogs on leashes. I watched ambulances and taxis roll by. I noticed the trees above my head catching the afternoon light. Most people were looking at their cell phones, and some were speaking into mid-air – you know how crazy folks look when they’ve got ear buds in and they appear to be speaking aloud to no one.
I felt a kind of awe. Like I was an alien who’d just landed on earth and was taking in these colorful, busy animals making noise and clicking their heels as they walked. No judgment. No epiphany. No better narrative. Just awe.
This is us, I thought to myself. This is the way we move through life when we’re not tethered to hospital beds. This is what everyone wants to get back to. It’s not fancy. One man who’d been sick a year told me, “I just want to get back to my girl. I just want to get a burrito with my girl.”
I remembered something my father asked my mother a week or so before he died, something he said in his morphine haze. “Do people know they’re alive?” he asked her. As if that one most miraculous thing was also completely lost on us.
And then I got up and I went back into the building.
Beautiful, Laurie! Thank you for this understanding of these patients. I felt the rawness of the experience from both sides.
I am recently diagnosed with ALS. I don’t look sick. I am sick.
Really sick. I won’t survive this. No treatment, no cure. I haven’t a clue when my expiration date will be, but I have a better idea than most. I had about a month where I really wondered if I was alive?
I felt wasted and spent. Something shifted in me and I feel a little bit alive. Quite sad sometimes, definitely without energy, but sometimes giddy, and goofy, and serious and creative and very definitely alive. I am so glad.
My heart goes out to you.
My husband had ALS. Like you, he somehow found the will each day to get up and view the world and engage with it creatively and passionately. He lived his life to the best of his ability, for as long as he could — much better than I believe I do day by day.
Mary, I am sorry for your loss. This crummy disease is even harder on the spouses. Please recover from it as best you can.
Please be as alive as you can.
Renee, what a note, thank you. I am connected to you today. I am thinking of you. I appreciate that you reached out. We need each other, we humans. Lots of love. Keep in touch. xxx
Very nice, Laurie. I can hear the leaves swaying as you sat on the curb…the light peaking through them…a beautiful time of awareness.
What a wonderful title and article. I have read it with much attention and sensitivity. Thank you for sharing it here.
You have been given a precious, special gift by being allowed to be with these people in such pain, on the bridge between life and death. A wake up call, again and again, to have the good fortune of knowing you are alive….but that things could change any minute. An old friend, perfectly healthy, who does everything right, was just diagnosed with an inoperable brain tumor. I know I am alive.
Great piece, as always.
You’ve done it again. Brava. *sniffle*
To be a patient and have you there…what a blessing. Carry on tender soul, you are in the right place.
Beautiful, Laurie. Such a great question. Do we know we’re alive?
Omg Laurie! Thank you.
So beautiful Laurie.
Having spent time with several loved ones in their last months I can relate to much of this.
But i must add that the fact that these people are strangers and you still show up for them is amazing. I have deep respect for you.
It is so true that we should be grateful for every mundane minute.
So easy to lose sight of this.
Love you ❤️
They hired the right writer, Laurie. You know this is Persephone stuff. This is digging deep like never before. All the ground work has been laid for you to step into this and illuminate. Witness work, your presence, your vulnerability doing the shy dance with theirs, and your special brand of articulate and sensitive meaning making is a profound gift to us, to them and to you. You are alive for it, I really feel that in this piece. Mmmmwah sending a big, big bubble of love.
Thank you for these words Laurie. “This is what everyone wants to get back to. It’s not fancy.” – this line struck deep into my core. A reminder truly live the life that is before us. Be present.
Laurie, my perception of my mother’s health shifted 3-weeks ago when an aneurysm was discovered. It was probably there before, but the diagnosis-the announcement of its existence- felt like an egg timer being set. Thank you for your attention to how we humans live, and putting your observations and experiences forward with words and vulnerability to be consumed and acted on. Thank you for the reminder to slow down and feel the fear and hurt that comes with living–this is what I’m carrying in my hara as I approach my mother’s next doctor appointment today. Thank you
Wow, Laurie – this is everything. Thank you for sharing this story.
Laurie, I so love that you are doing this. My head swirls. I always think about how we can be givers via our creative tools. This one is a home run. And of course, as givers we receive so much, not that that is the goal.
I love that you’re doing this work. Feels like witness. Like truthsitting. Like love when it is a verb.
When R couldn’t talk, and we were in the cancer hospital, I remember the screaming, the people who had voices left to shout their suffering. Vocal cords alive. That was a moment of clarity.
Beautiful. Thank you.
So beautiful, Lolo.
“sometimes there are no words for what’s happening,” and yet you, Laurie, have found words. Thank you for translating I love you!
Thank you, Laurie… ❤️?
“sometimes there are no words for what’s happening,” and yet you, Laurie, have found words. Thank you for translating I love you!
Simply stunning piece. Thank you, dear one!
my hero who doesn’t pray, boom, boom, boom, alien loves life…. xoxox
Outstanding!!! I love the question from your Father? I had a close friend die of cancer almost two years ago and it was a wake up call for me. I quit complaining about having to get up and go to work on Mondays. When a good friend lost her husband about 10 years ago, I stopped getting mad when my husband kept me awake at night because of his snoring.
I really identified with your hesitations and sense of inadequacy that caused you to need to compose yourself before starting on a given day. I see elderly people, many very ill, many who don’t remember me from one visit to the next. So it’s a little different context but I always feel very humbled by being in the presence of such a dramatically different situation where people are Dealing with fear, pain and uncertainty of great age and death often at hand. It’s very grim and sad in the moment often times, but I really frequently walk out of there with a lighter heart and a deep deep appreciation for life. Thank you for the window into this amazing experience that you are having.
Wow, Laurie. Beautiful.
There’s a wonderful scene at the end of the very first episode of ‘Six Feet Under’ where Nate—having just lost his father to a traffic accident—stands motionless on the sidewalk, sharing glances with the people who walk by. There’s a shared sense of humanity, of the gift of just being alive. Our fragility is so real. Two of the women in my life very recently had strokes; one was at a café, the other was hiking.
The take-away, for me? “Anyone. At any time.” And so, as an African proverb puts it: “When Death comes, may he find you alive.”
beautiful. thank you.
This could sustain me, for all of life and love:
‘I remembered something my father asked my mother a week or so before he died, something he said in his morphine haze. “Do people know they’re alive?” he asked her. As if that one most miraculous thing was also completely lost on us.’
So beautiful, so touching, thank you for sharing. Glorious.
Wow, Laurie. This is deep good work. I am in awe. A woman stopped in the gallery yesterday and read Maya’s grief poem we have hanging on the wall with our description of The Museum of Goodbye. I was outside and she came walking toward me with tears streaming. She said she lost her sister 33 years ago to a brutal rape/murder and the poem overwhelmed her in a good way. We talked for a while in the hall about grieving and somehow wound our way to the sounds we make when we cry. She told me she was a nurse in the pediatric ICU for years and there are cultural sounds to grief. Asian women are silent. Middle Eastern women bang their heads on the floor or the walls and wail. We both remember specific moments we have heard the “Aaee,” as one of our artists titled his piece, a painting three faces of a woman screaming her grief. Your witness of the young man’s tears is such a powerful narrative. Holding grief this way is honorable. You are telling true stories brilliantly, as always.
Yes. This. You know me. You know my story. 2004. Breast Cancer. Surgery. Chemo. Radiation. Faced with the very real possibility I could die. And deciding to live out loud for the rest of my life.
I love you. This is raw and authentic and painful and tear-jerking and so beautiful. I remember when my Dad was diagnosed with terminal cancer and went outside of the hospital, very similarly to you, and watching people just go about their lives and thinking, “don’t they know what just happened? How can they not know how much our lives, my Mom, Dad and my sister, just got thrown upside down?” And I got angry at people on their phones, not paying attention, not appreciating what was around them. I wanted to yell and scream, but one simply doesn’t behave like this in public. My Dad didn’t want to talk about it either. I feel like, for him, if he didn’t talk about it, it didn’t exist. He thought that if he stopped drinking, it would stop the cancer. He finally opened up a little to my Mom just before he died. He was scared…it was something he couldn’t control which for him, for me, is one of the hardest things to realize. I wish my Dad had wanted to talk about it. I wish that someone like you had been there in the hospital and hospice. You carry a calm magic that will hopefully, have those remarkable cancer patients opening up to writing their story, even in their moments of disarray and numbness. xoxoxo
You are praying…just by being there. You are bearing witness.
It takes such strength and grace on both sides of the equation.
Really proud of you for taking this on.
Thank you, Laurie, for the reminder that we are alive.
I imagine you walking into my recovery room … and though I was not as sick as those you are visiting now … I just know that the light that would have traveled along with you would have been a balm. Even though you might not receive verbal responses from these patients – I can’t help but think that you are providing solace. Thank you for the work you’re doing Thank you for sharing it. This piece made me misty in the best possible way. I will walk into my day feeling more alive because of it, and you. Love you.
Oh Laurie. So many feelings but all I can really think of to say is thank you. Thank you from the bottom of my heart for waking me up to the fact that I am alive. xo
In the play “Our Town” by Thornton Wilder, a young woman, Emily, has died. She is granted one wish – to return to visit her life for one day. She chooses an ordinary day, her twelfth birthday. She watches as the day passes, people busy with small tasks, not seeing or paying attention to one another. She returns to her grave, and asks, “Do any human beings ever realize life while they have it . . . every, every minute?” The “Stage Manager” or narrator replies, “No. . . Saints and poets maybe . . .they do some.”
Thanks to Laurie and all you saints and poets out there.
Laurie, I love how you rise to the occasion choosing to face the suffering of people needing to live clearly outside of anyone’s familiar comfort zone of life. I appreciate the open window you paint, where we can share it with you.
I didn’t have time to read this and yet, I ate up every word. Maybe ate is the wrong word. I soaked it in. I felt those chills running up my arms. Beautiful.
Thank you for the beautiful reminder that life is precious. We all need to think on that.
Beautiful Laurie… insightful and humbling and moving, and all of it going deep deep deep. It’s raw and honest and makes me reflect on the fact that living and sickness, and living with sickness, can bring us face to face with the raw, vulnerable and exposed parts of ourselves and others, in amongst the ebb and flow of daily life.
Your piece is a beautiful multi-recipient gift. Thank you, Laurie.
A month later, and this still makes me weep. Such grace in the rawness of this writing and his experience, such beauty in the grief and hardness, and generosity…generosity everywhere. Thank you for bringing us to the table of this conversation, Laurie.